My Personal Journey with Recurring Phylloides Tumors

English: Woman undergoing a mammogram of the r...

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By Natasha Polak

For Bangari Medical Content

A Phylloides (or Phyllodes) tumor is a rare tumor found in the connective tissue of the breasts in females (most commonly) and sometimes males.  If given a chance to become malignant and metastasize, the resulting sarcoma can be very hard to treat.  This type of cancer is different than what you would ordinarily think of as breast cancer, which affects the lymph nodes.  Because of this, traditional methods of treatment, such as with radiation, or chemo therapy, are ineffective once the cancer is in the bloodstream.  Most doctors will recommend a lumpectomy, partial mastectomy, or mastectomy to remove a malignant tumor before it spreads.

A recurring Phylloides tumor, or multiple tumors at the same time, are rare, but someone who has ever had a Phylloides tumor is always at risk of developing further more.  A bilateral Phylloides tumor referrs to a tumor that appears in the other breast, and is also rare.

Prevention and Detection

Unfortunately, Phylloides tumors are not as widely known in the medical world as yet, so there are no definite links to the root cause.  Heredity does not seem to play a role in its presence as of now, nor do the existence of other diseases or disorders.  However, there seem to be more women than men in the past 20 years who have been diagnosed with single and multiple Phylloides tumors, suggesting that what does not seem to affect whether or not a woman/man will develop such tumors are hormones (or lack thereof), age, and ethnicity.  In fact, anyone in their teens or even over the age of 80, from anywhere in the world, is at equal risk for a tumor.

Even more troubling is the fact that a Phylloides tumor is fast-growing, with the possibility of having both benign and cancerous traits.  As a tumor grows in size, it can at any time become malignant.  This is not necessarily true of other forms of cancer.  Phylloides is also not distinguishable through imaging alone; a complete excision (surgical removal) is recommended for biopsy purposes.  Only then can its name-sake leafy shape be seen under a microscope.  In some cases, core-needle biopsies are conducted, but keep in mind that the full extent of the tumor may not be observed and accurately diagnosed.  And because Phylloides resembles a Fibroadenoma, it is crucial to be able to distinguish between the two through careful study alone, rather than relying solely on imaging or a tissue sample.

When any breast lumps are first observed on a mammogram or ultra-sound, doctors are prone to taking the “wait and see” approach until at least 2 centimeters in size, which obviously means that some patients who actually have a Phylloides tumor run the risk of it continuing to be a threat to the body.  Other patients may fare better, having had a history of Phylloides so that doctors may move more swiftly and err on the side of caution to treat any new lumps as possible Phylloides and opt for excision, especially if they are deeper or fast-growing.  For those who with a history, more frequent exams are required in an attempt to prevent the delay of treatment of any new tumors that develop.

Biopsies

Core-needle biopsies are minimally-invasive, less-cost measures to determine if a tumor is cancerous.  Since they are not recommended for detecting new or recurring Phylloides tumors, excisions are preferred.  Done under general anesthesia as an out-patient surgery, an excision usually takes less than an hour, and the patient is able to go home later that same day.  There may be soreness, tingling, or numbness for a few days, but the body heals and normal activities may be resumed as tolerated.  In the long-term, patients may occasionally experience nerve pains, which may be treated with a mild pain-killer as needed.

The results from a biopsy can take up to a week for patients to receive, and if Phylloides is the diagnosis, a secondary excision identical to the first is necessary in order to obtain clear tissue margins (anywhere from 1 to 2 centimeters) from around the site of the tumor.  This ensures that all traces of the removed tumor are gone, so that new ones will not form.  However, if a doctor is able to see enough visual similarities in a Phylloides patient’s new tumor upon initial excision, he or she may decide to take the extra tissue at the same time as the tumor’s removal.  You should discuss that possibility with your doctor ahead of time, and if such an option is feasible, depending on the location and depth of the tumor, as doing this may be considered a lumpectomy with wider margins of 1 or more inches.

Support System

Being part of a support group is crucial to patients’ outlooks and understanding of what to expect with Phylloides tumors, whether new or recurring.  Because of the newness of this medical issue, some of what doctors are learning is through patients’ own stories as well as those from others in support groups.

Having had bilateral recurring Phylloides tumors in the span of three years, I can tell you that my support group was what made me able to focus on each step I had to take, and no question I had was ever too silly to ask.  With all the research I did on Phylloides after my first tumor (which was benign with pre-cancerous tendencies), I thought I wouldn’t have to worry about it coming back, especially when I was given the all-clear in my 6 month check-up and mammogram and told it was most likely not going to return.  Yet, at exactly 3 years later, my mammogram showed a tell-tale mass that I hadn’t even felt.  At the time, I had had a standard mammogram done (it’s cheaper), but was told that with my history I should consider a diagnostic mammogram, like what I had had at my six month exam, because of it being more thorough.  Imagine my surprise, then, when I got the call a week later to advise me to get a diagnostic mammogram anyway because of a “suspicious abnormality”!

As soon as the radiologist tech showed me the images from that mammogram, she told me that she was going to try to flatten the tissue so that it could be measured.  When they proved difficult, an ultra-sound was needed to measure its size and to ensure that blood flow was not cut off.  I was then referred to the doctor who had done my previous excisions, whom I met with two weeks later, and because I could now feel the tumor, she suggested I wait sooner rather than later to excise this new one, and that she would see if she could possibly take 2 inches of extra tissue at the same time.  I am fortunate that she moved quickly, because a week later it was removed, and at that time, she was somewhat surprised to discover during the procedure that the tumor was deeper than she had thought.  Accordingly, she did remove the 2 inches of tissue, and had pathology results in 3 days that confirmed another benign Phylloides tumor.  So now I know better. I am even more determined today to do all that I can to help others navigate through the uncertainty of what they may be going through, and what steps they can take to get the answers they need to save their lives!  Please join my cause. If you have had a phylloides tumor, or get recurring Phylloides tumors, leave a comment. I’ll be happy to answer any questions (outside of giving medical advice that you should receive only from a qualified physician) and we can form a small support group of our own around this post, helping each other fight a worthy battle for our health.

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6 responses to “My Personal Journey with Recurring Phylloides Tumors

  1. Very well done! I learned something here. I’ve never heard of this particular type of tumor.

  2. Thank you for sharing! Excellent summary. I had a mastectomy one year ago due to a large phyllodes tumor. The most important thing we can do for each other is provide support and share our experiences. I truly appreciate you sharing!

  3. Thanks! It is rare, only about 1% of all cancers results from a Phylloides tumor. My surgeon only sees 1-2 people a year with PTs, and she rarely sees anyone with malignant Phylloides.

  4. Melinda – if you’re not already on the Facebook groups, I urge you to find it and join us!!

  5. Pingback: Breast Self Exams | Bangari Content Gallery

  6. I recently had my second phyllodes tumor removed from my left breast, in the same region as the first. The first was around 11oz, the second the size of a lemon. After reading in detail about the tumor I am going to be much more pro-active with its early detection and removal.

    Some women are having a breast ultrasound every 6 months as pro-active early detection. Rather than burying my head I am going to do this, to catch the next one early, if there is one, and get it out as soon as possible.

    I had a partial mastectomy with most of the nipple and inner breast remaining and pectoral muscle removed with a large swathe of the breast tissue itself (all of it laterally). The surgeon wanted to do a complete mastectomy but I convinced him to take what he needed to get a wide clear margin and that if it came back a third time we would take the whole breast.

    It is difficult to let go of a body part that carries such a significance in our society. However, I have realized that this growth can be deadly and will not hesitate should it re-occur.

    Does anyone know about the accuracy of a breast ultrasound and its possible impairment with either an implant or analogous tissue implant (reconstruction with your own body fat)? This is my next question, and I may not do the reconstruction if it can hinder a proper exam for early detection of new growth via ultrasound.

    Thank you also for an excellent article. I appreciate all the information I can learn on this topic.

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